Little kids always ask me, “why do you sit in that thing?” In reference to my wheelchair. And I know their mommies wonder too. Honestly, sometimes I do myself.
There are so many reasons, and at the same time, there are none. I have dealt with various ailments throughout my life, though if you were to choose just one, I’d be walking still.
I was diagnosed with a rare neuromuscular disorder at thirteen, understood to be genetic- though from my observations the degree of FA deterioration is largely based on the person’s lifestyle choices (nutrition, exercise, happiness). The three work together for the ideal health, and so far I’ve got the first two down… but general life trauma, anxiety, and inevitable Scorpio influence often obscure a positive vision. (I love you Scorpio's, I’m just saying, having my moon in your sign can be trying.)
However well one’s body is working, a disease like FA will always leave you at a disadvantage. Much of the time I have limited energy and the awful feeling that I’m being starved of oxygen. What can help this? Recently, I read a study about the effects of young, healthy blood on aging and diseased patients. FA causing the muscles to prematurely age, a normal dose of Frataxin riddled blood could be the missing link. (Frataxin is the protein I’m missing out on and the root of all this oxidative stress.) On top of that, I suck at breathing.
Though most people thought I had a drinking problem and I’d hold onto everything, I still walked until I did chemotherapy for the Osteosarcoma I was diagnosed with at 19. That absolutely sapped me, and I feel like now, 8 years later, I have finally rid my body and mind of that poison. The chemo drugs came with an extreme leg surgery to cut out the cancer, replacing the bone with metal. I still wonder at times how necessary that procedure was. The metal failed (twisted, broke) twice, with each replacement more of my femur was taken away... and now, all these years later, as I’m finally healthy and getting stronger, I’ve been struggling and feeling intensely my right leg shortness and how much it’s been throwing my whole body out of whack. This has put my family and I through unimaginable pain, and cost me a promising career in graphic design, which I was intending when all this went down.
My reason for writing my story is to share with those who are also struggling health wise and also to personally document where I am now. Expect more updates on health inspirations that I love (and have helped me), as well as a more detailed blog on my cancer experience.
In this photo, I’m at an optometry appointment- getting my vision evaluated- finally addressing my need for glasses. I had a pair many years ago, but generally avoided them due to the hassle of having to keep track of them/clean them (so much responsibility). I also feel that if I were to wear them all the time, my eyes would get gradually lazier; but I look forward to this pair for the occasions that I require distance-clarity.